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Hep C Discussion Forum -> Liver Transplant -> Happy 4th
Post Info TOPIC: Happy 4th
sailing shoes


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RE: Happy 4th
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I had a cold the FIRST week after my transplant, while I was still stapled shut.  The sneezes were memorable - I thought I would eviscerate myself.  My doctors tsk-tsked with empathy but weren't too concerned.  They let it run it's course.  So I tsk-tsk with empathy as well, Boxers.  

I agree with Tig - careful with old antibiotics and not taking the full dose.  Of course, you know that after dealing with lung problems for 25 years.  biggrin



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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016
Tig


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Be careful taking unprescribed antibiotics! A cold or flu can be viral in origin and an antibiotic for no reason can cause what is known as antibiotic resistance to a genuine bacteria. In light of your recent transplant, be very careful! You don’t need to cause a super bug that future AB treatment would prove ineffective. I hope you get to feeling better soon!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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boxers


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Hi RC, tell Ragdoll I think she needs to write that book regarding recovery in's and out's. I can't believe how much they stress to not expose yourself to any bacteria and how you have a very compromised immune system, then I go in for a routine visit Friday with a sore throat and head/chest cold. Asked about an antibiotic and he pondered it for a second and says he doesn't think I needed it but if I got worse over the weekend go to the ER. WHAT!!! Saturday (my 37th anniversary) I could not get up until 5pm, coughing my head off etc. sooooo I took some antibiotics I had here. So, I am slowly getting better (no thanks to them). I have had lung disease for 25 years and been to every specialist there is...I know my body and what works. I need to get back to my primary, she knows me well. I have an appt. 8/5 thank God! If I had my way, I would just see Melissa and Amy (here), they know more about what is going on. Sorry about the venting but I know you will get it. My wound is healing amazing well, be glad when I am without these dressings. Sounds like I have something to look forward to, 10.5 months, glad you are starting to feel "normal" again. It has been so nice out, I hate wasting one day feeling icky, I just want to go pull weeds and dead head flowers and walk the dogs. Are you doing any walking? I got lazy when I got home so I going to have to make use of the "coat rack" exercise machine. I will probably have to oil it...lol. Well glad to hear you are feeling good, let me know how your lab work goes and any changes. Appreciate yours and Ragdolls friendship!

 



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
boxers


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Recovery
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Canuck, 4th came and went without too much excitement. I think because it was a Wednesday, people mostly went to the "big shows" in town. Nevertheless the lake show was relatively quiet. As far as labs, I am going to doc. every two weeks and labs at that time, wound clinic every week. At three months I go once a month. It is hard for me not to get the labs more frequent, I am such a control nut, I want to know if they are stable. I have a chest cold now but doc. didn't feel I needed an antibiotic....ugh! Not to impressed with post op care.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
boxers


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RE: Happy 4th
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Sailing Shoes, good to know about the lips tingling, I was worried I may have a mild allergy to one of the drugs. Glad you are having some  quiet time.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
boxers


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Ha Ha ...For some reason ice cream and chocolate seems to be tolerable...so I eat it until I am embarrassed. I have lost 19lbs since surgery. I drink a boost (chocolate of course) every day.

 



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
Iris Dragonfly


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Spent most of the day cleaning up dry leaves and watering down the place, neighbors get a little nuts with the rockets red glare,  you'd never know it was illegal and it seems to get worse every year. On the upside, I don't have to go anywhere to view the sparklies.!

biggrin

Happy Birthday America!

Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
SeeTheLight


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Not a holiday for me of course, but I wish you all a very happy happy 4th of July. party.gifI  am sure happy for your friendship and all of our freedom in the future. handshake.gif



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND
5-1-18


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Happy 4th everyone. i am thank ful to be here on this forum, thankful for my forum friends here. thankful for modern daa's.  and soooooooooo very thankful for our FREEDOMs . yeehaw!



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Tig


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I’m thankful for our freedom and friendship! Happy 4th to my Hep C Friends and Family!

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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robertsamx


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Hi Deb (Boxers).   The chapped lip thing- Compleatly normall. The combo of the Tac, Myfortic, Prednisone,and the anti Viral and anti Fungal, and the list goes on and on - all cause dry VERY dry skin and dry cracking lips. I had it all. It finally went away 2 months off the Prednisone, when I was and am still just taking Tac. 

Your appetite is a result of all the drugs mentioned above. There were days (weeks really) when I would take all my meds in the morning and it was All I could do to keep them down, and eating was the last thing i wanted to do. 

Your body is just now feeling the full effects of  all the drugs your taking and now they are taking a toll on your energy level and your appetite. I went through everything your feeling. Its normal for now. Your going to feel crappy for a while, there will be good days and some bad days, hang in there because it will get better as time goes on. Im at 10 1/2 months and just now feeling like things are going to be ok. there were  some moments I thought I wasnt gonna ever feel good again, they passed and today its going to be ok. Deb, its a process and your going throug it right now. Its hard, we are tough and we can do it, you can do it!!

Happy 4th everyone, Lets all celebrate our independence from HCV and HCC.     RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
sailing shoes


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Oh yeah, Boxers, you gotta eat. Recovery burns lots of calories. I was also losing weight, and was told to eat lots ... I think the brownies and ice cream did the trick. Now I'd like to lose a few pounds. Tomorrow.


__________________

70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016
sailing shoes


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Hello Boxers,

My lips tingled and felt numb(?) until I stopped Cellcept (mychophenolate).  The tingle stopped immediately.  I also slept much better without Cellcept.  However, lately there has been some sporatic tingles again .... Stupid nerves.

I wish I could do with a lower dose of Tacro.  I take 3 in the AM and 2 in the PM and my level runs between 5.1 and 5.7.  Doc says that's right where he wants it.  Tacrolimus is the only immuno-suppressant I take.  I've been on the same dose for close to a year now.

I spoke with the research/trial nurse about a program to wean off immuno-suppressants altogether.  I need to be 3 years post TX to be considered.  I know a person in the program who is 7 years post and has been completely off meds for close to a year and is doing fine, walking her two dogs in the park every day.

Someone said recently that the recovery takes a lifetime.  I'm beginning to see the truth in that. 

Good luck, happy 4th, be careful of sun and dirt and potato salad.  Hug the dogs.  My wife's old college buddy just stayed with us for a few days with her Yappin Yorkie - 5 pounds of doggie who thinks he's 50 pounds.  She left this morning and the silence is golden.  We're staying put this weekend.

 



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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016
Canuck


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Hey an especially Happy 4th of July Day to you Boxers (and to all my friends living to the South of me) - I'm hailing a Happy Jul 1st Day right back at ya (neighbours)! (I can do both Jul 1 and Jul 4!, as long as it involves some free hotdogs). I agree, home is a good place to be, to celebrate many things!, your return home (and, holed up at home is where pets need to be on firework days), everyone safe in the familiar comfortable protective fold of home eh?

You are hard at work in recovery. It IS work isn't it? Seemed so for RC and SS. I certainly don't think you sound "a mess"!! Not in that negative way, at ALL! I think you are wonderful and brave and lucky! Eventually things will get sorted, balanced, healed.

How often do you have to go for labs, and how far away is the lab, and how are you working the close following of you out between all of your docs?

Funny (not) how often it is only in retropect that we get to figure these things out (energy burst was due to prednisone levels?), sides due to tac levels, and Murphy's Law applied to the wound healing, all testing you. Sorry about that. But things will improve and fade over time, the kind of retrospect we want and will see for you!

Not a clue how to encourage your appetitie, but surely we have a hoard of folk here with good ideas - does hubby cook? - that would be my best advice - or, get a cook, either that or adopt a self-defense "grazing" method of eating all day long just to keep the calories suffcient. But ... the content (good foods) is important too. 

I know!, Obs is an excellent cook, I am trying to get her to cook for me, I'll let you know if she bites. wink C. 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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boxers


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Just wanted to say hi and happy 4th of July. Hope you all do something fun, we stay home because the dogs don't like fireworks. We live by the lake, so we just watch the show the lake people put on. All is going well, one weird side effect which surprisingly the doc said he had never heard of, my lips are slightly numb and very chapped, drinking lots of water just in case I am dry. I googled it and sure enough a side of Tacrolimus. My Tac. level was elevated- 11, so they reduced my daily 4 mg. to 3mg. Dropped like a rock to 7 in 5 days. I am pretty sure I figured out my high energy level in the beginning, as soon as they tapered my prednisone....my energy level also tapered...nice while it lasted. Still nursing my wounds but they are healing nicely. I am also losing weight...down 17lbs since surgery. I don't have ANY appetite, I drink boost and make myself eat but I can't eat very much. Jeez, I sound a mess but I really feel I am doing good. RC, I hope you and Ragdoll do something fun for your rebirth day in Aug. I am thinking more about my donor, I will probably wait a year to give the family time to get over the initial shock before I write my letter. Well as I said, have a wonderful 4th and stay safe.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
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